We’re still in the hospital, still waiting for some decisive news to allow Michelle and Zoe to return home. Zoe had her best blood pressure yet today, 97/55, which is close enough to normal range to have the doctors talking … Continue reading
ad·vo·cate: one that pleads the cause of another; one that supports or promotes the interests of another The most important thing that anyone has told us during this experience was, “Be an advocate for Zoe”. I can’t possibly state how important … Continue reading
For reference, I charted a day or so of Zoe’s blood pressure, based mostly on Michelle’s record of her periodic BP tests. Originally I had intended this to be for us to look over rather than to publish here, but … Continue reading
I spent part of the morning getting Grizzly, our (now) huge pound puppy, up to date on his shots and his yearly checkup. I was reminded how often we seem to connect with people as a result of Zoe being … Continue reading
Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration. ~Charles Dickens We can’t go home yet. Last night was another hard night, more blood … Continue reading
We’re waiting on the answer to what seems like every question at the moment, so things have gotten a little tense around here. Zoe’s blood pressure is up and hasn’t responded as well as we or the doctors would like … Continue reading
Last week we were provided with a document sometimes called The Road Map, which lays out the frequency and rough dosage levels for the medications Zoe will be taking. It’s based on recommendations from the HLH-2004 treatment protocol I’ve discussed … Continue reading
Evan has been encouraging me to contribute to this blog my perspective as a mother. During this upside down time of our lives Evan has been coping through researching the illness and treatments and writing about it. As Zoe’s mom, … Continue reading
After a short break for Michelle and I over the weekend that included a movie for myself (Shutter Island) and a birthday party and play date for Michelle and Maya, we’re back on schedule at the hospital. It was a … Continue reading
Having raised Maya to 2.5 now and changed who knows how many diapers, I’ve seen some diaper rash. What Zoe is dealing with at the moment is more akin to the results of a napalm attack on her poor bum, … Continue reading